Parkinson's Disease Fitness, Exercise and Wellness
Wearing a red light bucket hat on your head for Parkinson’s
One of the most intriguing PD stories of the year has been an unusual fashion trend taking place in Tasmania (Australia). Wearing a red light bucket on your head for Parkinson’s is literally turning heads in Tasmania.
The treatment is known as photobiomodulation. It is experimental and unproven. It does not claim to cure Parkinson’s. The people who have been experimenting with this technology claim to see slow and subtle improvements in PD symptoms over time. It is not a double-blind study, and it is possible a placebo effect is responsible for any improvements.
An article on the ABC News Australia website from February 2019 provides a good introduction to a group of people with Parkinson’s Disease who are self-experimenting with photobiomodulation as a treatment to ease PD symptoms, and the efforts to turn these experiments into a clinical trial.
Grace Winiecki spends 40 minutes each day with a red light bucket on her head — a device she claims is making a significant difference to her life.
Kudos to Grace, as her picture turned PD photobiomodulation into a fashion statement. Dare I say, she became a fashion icon, and the gentleman in this picture was the first of many heads she turned with this bold new look.
Max Burr is the original patient zero of the PD photobiomodulation movement. He’s just not as photogenic when wearing his bucket, as featured in Weekend Australian Magazine 18 months earlier:
On a crisp and clear autumn day two years ago, when the sun was high in the sky but the air was cold on the ground, retired federal politician Max Burr was sitting in front of his computer at home in Launceston, desperately seeking some help.
With the tenacity of a seasoned politician, Burr, 78, opened his laptop and began to search. Before long he had found a research paper on the use of photobiomodulation — the term for light’s ability to modulate key biological processes at a cellular or genetic level — in animal testing for Parkinson’s disease, published by Sydney University’s Professor John Mitrofanis. “The paper showed that the use of 670-nanometre red light was protective of neurons in Parkinson’s,” Burr says. “So I sent John an email and said, ‘Look, this is all very interesting, I wouldn’t mind having a crack at it’. ”
ABC News in Adelaide posted a news video, featuring Max Burr, wearing the first generation design red light hat, designed by his friend, retired physician Catherine Hamilton. They enlisted the help of a local “Men’s Shed” to create different prototypes, and experimented with hard hats, bicycle helmets, hairdresser beauty shop dryers, and a timeless classic, the lamp shade, before finally settling on the now iconic red light bucket made famous by the news coverage.
(I had never heard of a Men’s Shed before. It’s a pretty interesting grass roots movement that started in Australia, originally focused on men’s health and well-being. Learn more about the movement here: https://mensshed.org/what-is-a-mens-shed/)
Max and Catherine were inspired by the research of Professor John Mitrofanis of the Department of Anatomy at the University of Sydney, Australia, who is an expert on photobiomodulation, and has conducted trials on mice. The professor cautioned Max that the treatment was experimental and unproven in humans.
Catherine became interested in red and near infrared light after reading “The Brain’s Way of Healing” by Norman Doidge, a book that we discussed in the previous post in this red light district series. Initially this interest was directed toward helping with her own knee pain, which she successfully treated using an 850nm LED light (designed to be used as part of a security system), which was purchased on eBay.
After doing more research, she asked her friend Max Burr, if he would be interested in trying this type of therapy to help with Parkinson’s Disease. They created a hat using 670nm LED strip lights, and Max wore it daily for 20 minutes. Over the course of 6 months, he saw improvement in the fine motor skills he had lost in his right hand. He enjoyed playing lawn bowls, but had stopped because of problems releasing the ball with his right hand, but after gradual improvement, he was able to resume playing lawn bowls using his right hand.
The following links provide more of the backstory as told by Catherine Hamilton:
Constant knee pain makes it hard to be active, so in mid 2015, I did a lot of sitting and reading. One of the books was Norman Doidge’s The Brain’s Way of Healing.
Chapter 4 covered the effect of red and near infrared light on the brain and spinal cord, and there were some remarkable stories told. In passing, Doidge mentioned the positive effect of red and near infrared light on arthritic joints and damaged tendons.
I went hunting on Google Scholar and found some medical journal articles that supported this possibility. I had no idea how this could be possible, but it was worth a try. I went hunting for a way to shine near infrared light on my sore knee.
Evolution of red/near infrared light hats
The first light hat was made in January 2016, and the framework was provided by a lampshade that cost $3 at an Op-shop (picture above). I think it was a bit expensive.
The lace was removed, and a 670nm LED strip put into it.
It was not going to win any millinery awards. But when the lights were turned on, it did was very effective at bathing the head in red light.
Interesting stuff, but where’s the research?
While there is a lot of research about photobiomodulation over the last 50 years, very little of this research has targeted Parkinson’s Disease. What little research there has been has been on animals, mice to be more precise. And, as referenced earlier, Professor John Mitrofanis is a co-author on most of this research.
Here are links to some of this research:
Neuroprotection of midbrain dopaminergic cells in MPTP‐treated mice after near‐infrared light treatment (2009-Sep)
Shaw, V. E., Spana, S. , Ashkan, K. , Benabid, A. , Stone, J. , Baker, G. E. and Mitrofanis, J. (2010), Neuroprotection of midbrain dopaminergic cells in MPTP‐treated mice after near‐infrared light treatment. J. Comp. Neurol., 518: 25-40. doi:10.1002/cne.22207
This study explores whether near‐infrared (NIr) light treatment neuroprotects dopaminergic cells in the substantia nigra pars compacta (SNc) and the zona incerta‐hypothalamus (ZI‐Hyp) from degeneration in 1‐methyl‐4‐phenyl‐1,2,3,6‐tetrahydropyridine (MPTP)‐treated mice.
Our major finding was that in the SNc there were significantly more dopaminergic cells in the MPTP‐NIr compared to the MPTP group (35%–45%).
In summary, our results indicate that NIr light treatment offers neuroprotection against MPTP toxicity for dopaminergic cells in the SNc, but not in the ZI‐Hyp.
The potential of light therapy in Parkinson’s disease (2014-Feb)
Parkinson’s disease is a movement disorder with cardinal signs of resting tremor, akinesia, and rigidity. These manifest after a progressive death of many dopaminergic neurons of the midbrain. Unfortunately, the progression of this neuronal death has proved difficult to slow and impossible to reverse despite an intense search for the specific causes and for treatments that address the causes. There is a corresponding need to develop approaches that regulate the self-repair mechanisms of neurons, independent of the specific causes of the damage that leads to their death. Red to infrared light therapy (λ=600–1,070 nm) is emerging as an effective, repair-oriented therapy that is capable of stabilizing dying neurons. Initially a space-age anecdote, light therapy has become a treatment for tissue stressed by the known causes of age-related diseases: hypoxia, toxic environments, and mitochondrial dysfunction. Here we focus on several issues relating to the use of light therapy for Parkinson's disease: 1) What is the evidence that it is neuroprotective? We consider the basic science and clinical evidence; 2) What are the mechanisms of neuroprotection? We suggest a primary mechanism acting directly on the neuron’s mitochondria (direct effect) as well as a secondary, supportive mechanism acting indirectly through systemic systems (indirect effect); 3) Could this be effective in humans? We discuss the pros and cons of this treatment in humans, including the development of a new surgical method of delivery; and 4) What are the advantages of using light therapy? We explore the features that make this therapy a promising potential treatment. In summary, early evidence indicates that light regulates specific neuronal functions and is neuroprotective in animal models of Parkinson’s disease. The stage is set for detailed and rigorous explorations into its use on Parkinson’s disease patients, in particular, whether light slows the disease progression rather than simply mitigating signs.
Near-infrared light is neuroprotective in a monkey model of Parkinson disease (2015-Oct)
To examine whether near‐infrared light (NIr) treatment reduces clinical signs and/or offers neuroprotection in a subacute 1‐methyl‐4‐phenyl‐1,2,3,6‐tetrahydropyridine (MPTP) monkey model of Parkinson disease.
All monkeys in the MPTP group developed severe clinical and behavioral impairment (mean clinical scores = 21–34; n = 11). By contrast, the MPTP‐NIr group developed much less clinical and behavioral impairment (n = 9); some monkeys developed moderate clinical signs (mean scores = 11–15; n = 3), whereas the majority—quite remarkably—developed few clinical signs (mean scores = 1–6; n = 6). The monkeys that developed moderate clinical signs had hematic fluid in their optical fibers at postmortem, presumably limiting NIr exposure and overall clinical improvement. NIr was not toxic to brain tissue and offered neuroprotection to dopaminergic cells and their terminations against MPTP insult, particularly in animals that developed few clinical signs.
Turning On Lights to Stop Neurodegeneration: The Potential of Near Infrared Light Therapy in Alzheimer’s and Parkinson’s Disease (2016-Jan)
Daniel M. Johnstone, Cécile Moro, Jonathan Stone, Alim-Louis Benabid, John Mitrofanis
Front Neurosci. 2015; 9: 500. Published online 2016 Jan 11. doi: 10.3389/fnins.2015.00500
Alzheimer's and Parkinson's disease are the two most common neurodegenerative disorders. They develop after a progressive death of many neurons in the brain. Although therapies are available to treat the signs and symptoms of both diseases, the progression of neuronal death remains relentless, and it has proved difficult to slow or stop. Hence, there is a need to develop neuroprotective or disease-modifying treatments that stabilize this degeneration. Red to infrared light therapy (λ = 600–1070 nm), and in particular light in the near infrared (NIr) range, is emerging as a safe and effective therapy that is capable of arresting neuronal death. Previous studies have used NIr to treat tissue stressed by hypoxia, toxic insult, genetic mutation and mitochondrial dysfunction with much success. Here we propose NIr therapy as a neuroprotective or disease-modifying treatment for Alzheimer's and Parkinson's patients.
Why and how does light therapy offer neuroprotection in Parkinson’s disease? Mitrofanis J (2017-May)
Mitrofanis J. Why and how does light therapy offer neuroprotection in Parkinson's disease?. Neural Regen Res [serial online] 2017 [cited 2019 Jun 28];12:574-5. Available from: http://www.nrronline.org/text.asp?2017/12/4/574/205092
Red and infrared light (λ = 600–1,070 nm) therapy, known also as photobiomodulation, has been reported to offer neuroprotection and to improve locomotor behaviour in animal models of Parkinson's disease, from rodents to non-human primates (Rojas and Gonzalez-Lima, 2011; Hamblin, 2016; Johnstone et al. , 2016). The neuroprotective aspect of this therapy is particularly relevant; the saving of neurons that would normally die as a result of the parkinsonian degeneration, is without doubt, the “holy-grail” for this, and indeed all other neurodegenerative disorders. The stage is set for translation of light therapy to human patients and there is much hope for beneficial outcome. In this perspective article, I would like to consider two major issues of light therapy that relate to its neuroprotective function, issues that have intrigued many scientific colleagues, together with the wider community.
Exploring the use of transcranial photobiomodulation in Parkinson’s disease patients (2018-Oct)
Hamilton C, Hamilton D, Nicklason F, El Massri N, Mitrofanis J. Exploring the use of transcranial photobiomodulation in Parkinson's disease patients. Neural Regen Res. 2018;13(10):1738–1740. doi:10.4103/1673-5374.238613
A number of recent studies have shown that photobiomodulation, the use of red to infrared light (λ = 600–1070 nm) on body tissues, has beneficial effects in many animal models of Parkinson's disease, from flies to monkeys (Hamblin, 2016; Johnstone et al., 2016; Mitrofanis, 2017). These benefits include, a restoration of the abnormal neuronal activity in the basal ganglia, an improvement in locomotive behaviour and reduction in clinical signs, as well as an increase in the survival patterns of neurones damaged by either the parkinsonian toxin or the genetic mutation of the model used. This latter neuroprotective disease-modifying effect is particularly relevant because it is the key process in Parkinson's disease and is currently not addressed by drug and surgical therapies ...
Photobiomodulation in Parkinson's disease: A randomized controlled trial (2019-May)
Santos L et al., Photobiomodulation in Parkinson's disease: A randomized controlled trial, Brain Stimulation, https:// doi.org/10.1016/j.brs.2019.02.009
Photobiomodulation, which uses non-thermal and non-ionizing light in the visible and infrared spectrum, has been proposed as a potential strategy for improving the symptoms of patients with Par- kinson's disease (PD) , but this has not been tested in a random- ized controlled trial (RCT). We thus sought to assess whether photobiomodulation can ameliorate the cardinal motor symptoms of PD using an RCT design.
The present RCT (NCT03811613) was conducted from January 29theApril 6th, 2018.
Photobiomodulation improved gait speed in the fast rythm of the TMWT by 0.33 m/second on average, which is of potential clin- ical relevance as 0.23 m/second has been identified as the minimal detectable change . Our findings are in agreement with those of a previous study that reported gait improvements in PD patients af- ter transcranial photobiomodulation , as well as with other pre- clinical studies that suggest that photobiomodulation could be a potential strategy against neurodegenerative diseases .
So, if you want to try this out yourself, what should you do?
Well, start by talking to your doctor. Read the research links above, and share the information with your doctor. Make an informed decision, because let’s be honest, this is weird science, and definitely experimental. Defective lights could even be dangerous!
If you decide to continue, the lights are the most important piece of the puzzle. Red and near infrared lights come in a baffling array of wavelengths.
The Tasmanian group observed the best results with a session using 670nm (dark red) LED lights, followed immediately by a session using 810nm LED lights. They caution that if you have any other kind of brain disease, including Parkinson’s Plus, only 670nm should be used.
What wavelength is best for my condition?
If you have looked at the availability of rolls of red and near infrared LED lights, you will see that there is a bewildering array, between orangey-red (630nm) to out of the visible spectrum so that you can’t see it at all (940nm).
So what, you ask. Surely it doesn’t matter? Surely red light, near infrared light – it’s all the same? One wavelength is as good as another?
Wavelength matters – please be cautious!
Catherine Hamilton’s team has published two DIY designs. The original is called Eliza, and they are now recommending an updated design, called the Cossack:
DIY red light hat (Eliza)
You can make your own one-wavelength transcranial light hat at home. The story of how it all came to be is here. These light hat instructions produce a rustic light device. It will not receive any any compliments, but it works.
It is a low-cost way to get red and near infrared light onto your head. And if I can make it, anyone can.
Cossack Instructions…at last
Instructions to make a Cossack light hat.
PD Red and Near-Infrared Light Therapy Experience (Photobiomodulation)
On June 22, 2019, I began a 3 times per week, full-body Red and Near-Infrared Light Therapy (Photobiomodulation) treatment with a local chiropractor (Dr. Eric Bunge). My primary objective is relief of muscle pain, soreness and. inflammation which may be directly or indirectly related to my Parkinson